You've survived cancer. Now what?

WHEN GWEN DARIEN was treated for non-Hodgkin's lymphoma 15 years ago, no one gave much thought to how she might feel if she lived.

"Everything was focused on treating the disease and getting the cancer out of your body," said Darien, now director of survivor and patient advocacy at the Philadelphia-based American Association for Cancer Research.

Long-term survival after cancer treatment was still so unusual that no one considered that the radiation and chemotherapy she received might cause side effects years later. No one talked to her about work or the psychological impact of her treatment.

"Nobody talked to me about fertility," Darien said. "Nobody talked to me about potential long-term events."

Increasingly, cancer experts are devising ways to warn patients like Darien - there are 12 million cancer survivors in this country - about problems their treatments or the cancer itself can cause later on. The information is crucial because primary-care doctors often do not connect a new heart or nerve problem to cancer treatment that occurred years ago.

The "survivorship" phase is a hot topic. The Institute of Medicine pushed for greater attention to post-treatment needs in an influential report called Lost in Transition in 2005. Cancer centers are forming survivor clinics that help patients watch for new cancers and manage treatment-related symptoms. They are studying survivors' needs and improving coordination of care by cancer specialists and other doctors.

"It's really a culture change that has to occur in terms of how patients view themselves, how providers view the patients they're following," said Linda Jacobs, director of the University of Pennsylvania's LIVESTRONG Survivorship Center of Excellence.

In this region, a computerized survivorship program from Penn's OncoLink, a Web site devoted to cancer, recently got a big boost from the Lance Armstrong Foundation (LAF). The foundation will give $2.3 million over four years to OncoLink, which creates individualized treatment plans for survivors.

Andy Miller, LAF's vice president of programs and policy, said OncoLink was ahead of the curve in creating survivorship care plans that many people can use easily.

"What we've heard from survivors, this is what they need," he said. "This is what the Institute of Medicine is calling for."

LAF is joining with Penn to market the computerized-care plan, which will be called the LIVESTRONG Care Plan Powered by Penn Medicine's OncoLink.

"The reach of the Lance Armstrong Foundation is so great that we have an ability to get this out to many more people," said James Metz, a Penn radiation oncologist who is editor in chief of OncoLink.

Patients need such reports, Metz said, because cancer care increasingly involves multiple types of drugs, often combined with radiation and surgery. It's saving lives, but patients need to be aware of the long-term consequences.

"These treatments we give are the gifts that keep on giving," he said. "Toxicities can happen months, years, decades after treatments were given."

At OncoLink, cancer patients can type in information about their cancer and treatments. The program generates a report outlining medical tests they should receive, possible side effects of their treatments, and what they can do to keep cancer at bay.

Breast-cancer patients who have taken the chemo drug Adriamycin, for example, can later develop heart problems. People who have had surgery risk lymphedema, which causes tissue swelling, even years later. Many patients are unprepared for sexual and fertility problems that cancer treatment can cause. It doesn't seem fair, but if you have had one cancer, the report will tell you that you are more likely to get another one.

Ellen Stovall, acting president and chief executive of the National Coalition for Cancer Survivorship, has been advocating for better care planning since 1994 and is still pushing Medicare to pay for the time-consuming work of producing good treatment summaries and care plans. Stovall's chest was radiated to treat Hodgkin's disease in 1971. In 2007, doctors found cancer in both breasts "along the fault lines" of her radiation treatment. She also has a type of blood-vessel damage often found in people who have received radiation.

Stovall said she was "very excited" about the OncoLink project. "It's very easy to use," she said. "I really liked it."

Darien checked out her OncoLink care plan earlier this month. She already knew that her chemotherapy could damage the heart. She has had gum problems she traces to her treatment. Much of the OncoLink care plan was old news to her, but she thought many patients who had just finished treatment would find it helpful. She had not previously heard of connections between her treatments and bladder cancer or blood-vessel and swallowing problems. She liked the section on chemo brain, the fuzziness many cancer patients say they experience after treatment. "It's wonderful to see that taken seriously," she said.

Denise Shaw urged her husband, Bob, an esophageal-cancer survivor who was treated at Penn, to try the care plan. "I wanted him to see in print what some of these poisons they gave him to kill the cancer could do to him," the Drexel Hill woman said. The information was not a surprise, but she said she thought it was helpful for her husband to see in writing that his fatigue is likely a result of his treatment.

About 5,000 people have tried the computerized plan since its debut in May 2007. Only about 12 percent had received any previous survivorship information.

Carolyn Vachani, a nurse practitioner who works with OncoLink, spearheaded the project because doctors told her they had too little time and money to produce care plans for their patients. That left patients "out there with no information and experiencing these problems with no knowledge at all that they could be related to the treatment they received."

A weakness of the system is that information about the long-term effects of cancer treatment in adults is spotty, said Patricia Ganz, a UCLA oncologist whose work has focused on cancer survivorship. OncoLink also is not precise enough about the treatment patients received to suit her. As a result, she says she finds the resulting care plans too generic, though improving.

Ganz has been developing computerized programs that make it easier for doctors to give patients a precise record of all the treatments they have received, another key aspect of survivorship planning. It includes much more detail than OncoLink's care plan currently requires. The two complement each other, she said.

OncoLink's program already is in its fourth version, and the Web site's leaders plan regular revisions.

Ultimately, patients may have less need to go to places like OncoLink for survivorship advice. Penn, Fox Chase Cancer Center, and Cancer Institute of New Jersey all are developing or expanding nurse-run survivorship clinics that give patients similar information in person.

E-mail sburling@phillynews.com or call 215-854-4944.